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Authors: O. Samuel
Journal: BMJ (1990)

<h3>Background</h3> There is an ever-increasing demand for deceased organ donation in the UK with 198 paediatric patients awaiting a transplant as of February 2020. Conversely, in the year April 2019 - March 2020, just 3% (n=50) of all solid organ donors were children and young people under 18 years. Although the scope for donation by children with malignancy is small, organ and tissue donation (OTD) may be possible for some patients. Evidence shows that offering discussions around the topic might be beneficial to families, regardless of whether donation is achieved. However, there is little guidance or provision for training to support those professionals who may be involved in introducing these conversations outside of specialist teams. <h3>Objectives</h3> This study sought to assess the understanding of organ donation after death in children and young people with malignancy amongst clinicians working in Paediatric Oncology and Haemato-oncology, Paediatric Intensive Care and Paediatric Palliative Care. The survey intentionally included those clinicians working with patients who would be ineligible for organ or tissue donation, as conversations regarding this topic may still arise and therefore demonstrate a training need. <h3>Methods</h3> A 12-question online survey consisting of both quantitative and qualitative elements was constructed to identify common themes of understanding amongst clinicians in the specified departments. This was disseminated via a range of contacts, including national newsletters released by the Children’s Cancer and Leukaemia Group and the Association for Paediatric Palliative Care. PICU clinicians were targeted via local contacts within London units. Additional responses were received from local requests to specialist paediatric palliative care teams and paediatric oncology centres within London. Data was collated and analysed to reveal themes in clinician understanding, recognise barriers to discussion and identify a need for training in this area. <h3>Results</h3> There were 22 responses collected, the majority from intensive care doctors (32%) and palliative care nurses (32%). Nearly half of respondents (45%) had been asked about OTD by patients or their families, mainly during palliation. While most were aware of the possibility of OTD by children with malignancy (82%), nearly a third had never considered asking a patient or family if they would consider donation. The main barriers to having these conversations were recognised as lack of knowledge and training, and 36% cited concerns about initiating these conversations. Free text answers suggested the beneficial role in exploring this topic further and the majority of respondents felt online training such as webinars and E-learning would be most useful. <h3>Conclusions</h3> Organ and tissue donation by children can feel a daunting topic of conversation by patients, their families and professionals alike. However, evidence shows that these discussions are beneficial in their own right, regardless of whether donation is achieved. Our survey shows there is a need to raise awareness of the concept of OTD amongst clinicians caring for children and young people with malignancy, with a view to supporting those introducing OTD to families who might otherwise regret the lost opportunity to understand this element of their child’s journey with cancer.